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last updated 2:00PM Eastern Time, 9/10/2001 August 2001 Journal
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Wednesday, August 28 6:00pm Eastern Time, 8/29/2001 I seem to be overdoing my quota for updates this week. This is just to tell you that new photos of David standing (!) and walking (!!!) are on the photos page. -- Jay Tuesday, August 28 11:00pm Eastern Time, 8/28/2001 Just a couple of notes, then a good progress story from Mom. First, it was sorta buried in the last message, but David's skull replacement surgery has been rescheduled for September 11. Start tuning up your positive vibes again. This time we would really like for the operation to take place! Second, if you would like to make a donation for the Pike's Peak Challenge (to benefit brain trauma research) please send the check to Anne David this week -- it must arrive by September 7. Third, you may or may not have heard that David has transferred to a new rehabilitation center -- Woodrow Wilson Hospital (I think it's a hospital) in Waynesboro, VA. It's in the Shenandoah Valley, just across the "big" mountain from Afton. This facility is focused on a more traditional rehabilitation approach -- one-on-one physical, speech and occupational therapies. This (we think) is just what David needs at this point. He has made great progress over the last few months, and we would like to accelerate that process with this more focused therapy. Ok, here's Mom. And let me be the latest person to announce this: "my brother is awesome!"
Here's a new new update. You would have been so proud of your brother today as Ginger Shifflett evaluated him for speech. In the past either Bob or I really needed to be there so that needed information could be shared. Dave's responses were either too limited or simply undependable. Today was different (and some of the change is probably attributable to time but a large part must be given to the John Jane therapists!) Ginger:
Hello, Dave. I'm Ginger. How are you? She went on with a standard evaluation. I loved the eye contact she made with him and her appreciation of his answers. There were no rote "good job's" but actual responses to either what or how he answered. Comments like, "Dave, you get better as they get harder!" or "The faster I point, the quicker you read off the answers." or "This next paragraph isn't easy but it's my favorite." Dave paid special attention then, I guess, because he answered every question about that paragraph...and correctly. Listing the days of the week, months of the year, 0 to 21, he was perfect. Anyway, I was astonished by his progress and by the gleam in his eye as he answered. Bob or I will attend all sessions this week and then back off. After today, though, I realize that our presence is more for our benefit than theirs. We are developing contact with the therapists and getting a good view of where Dave is. This constant one on one will be good for now. It's what he's been wanting. Spilly and Baggo have gotten tickets through a family friend in Alumni Relations for this Saturday's Virginia football game. The friend, Tom Payne, came by today and was delightful. Dave is ready to roll. Love, Sunday, August 26 10:00pm Eastern Time, 8/26/2001 Most of today's update will be from Mom. (Yes, perhaps shutting the office door would be appropriate.) As you do that, however, I have a couple of additions to make regarding the Pike's Peak Challenge for which Anne Williamson David is organizing a team. First, Kathy Bell (bellieve94@email.msn.com) is inviting anyone who will be in town for the event a place to stay and a party afterwards. She and Brooke and Molly and Jack live in Manitou Springs, right at the base of Pike's Peak. Second, donations may be made by check to: "BIAC/Pikes Peak Challenge" and mailed to Anne at: Anne
David Next, I have a few photos to post of David, but they're not quite ready yet. Keep a lookout later in the week. Third, and last, a personal anecdote to share. I left the great state of Florida this weekend to participate in an Ultimate Frisbee tournament. The four games that we played on Saturday alone were just about enough to incapacitate the likes of me, but the incident took place halfway through the second game. Playing defense, two of our players made fantastic diving leaps towards a high-thrown disc. Unfortunately, they lept towards the same disc at the same time. The sound of their heads colliding made the teams on the next field stop playing to see what had happened. What startled me was the flood of memories and emotions that roared through me. Every moment of those first few weeks in the hospital with Dave welled up from the depths where I had filed them neatly away. That horrible sinking feeling that I first felt when Mom called to say that David had been in an accident and was in a coma - that feeling raced through me again. And the most powerful single memory that I had at this moment, watching two guys smack heads, was the sharp, unnaturally sterile smell of "hospital". Both players are ok. One got off with a mild headache. The other knocked out a couple of teeth and spent the rest of the day in the emergency room. Amazingly, he returned to play another two games this morning, with his teeth a little wobbly, but in place. It is very bizarre to me the kinds of experiences that have taken on new meaning. And so, now that I've shared, here is the real Dave update from Mom:
Dear
Friends and Family, His accessible vocabulary pile is growing, too. Verbs seem to be harder to call up than nouns, so creating sentences and initiating conversation is a problem. A couple of weeks ago David and I were driving back from Charlottesville. I love to strike off on back roads to see the beautiful farms and the peach and apple orchards, white fences and fields with grazing thoroughbreds, sleek and gleaming. We can’t get lost unless the summer haze hides the Blue Ridge Mountains. I just head toward mountains and turn south before I bump into them. It gets us home every time. Dave is less enchanted with our round about meanderings. I was exclaiming over a beautiful old plantation we were passing when David suddenly said, “Ten feet.” “What, Dave?” “Ten feet?” and then added, “Ten feet high?” Winding country roads demand a certain concentration, so I couldn’t really look at him. “Hmmm. You need to expand that thought. WHAT’s ten feet high?” A straight piece of road allowed me to check out his face. It was intent and showed that he really wanted to know something. “YOU said it.” I pondered. What had I just said that sounded like “ten feet”? He kept trying to clarify. “The fall.” “Oh!! You’re asking about the accident. About when you fell?” Big smile as we achieved communication. “Yep.” So I told the story again, and he took it all in, nodding, sometimes repeating a name, “Putter” and grinning, or “Tuts.” By the time we walked from the van (we never take the wheelchair) into our new home, I was remembering that fear, the awful plane ride Bob and I shared as we raced from Virginia to California praying he’d still be alive, knowing that it would turn out to be a big mistake and that our agile Dave could never be so badly hurt. As I explained, tears filled my eyes and spilled down my face, and my tall, strong Dave released his four footed cane and pulled me to him. As I rested my face against his chest and wet the tee shirt which had futilely dried en route, he stroked my back. He even chuckled. “Getting better.” My tears didn’t last. They never do these days. His progress is too evident, and he himself focuses on the positive. As he said in therapy, “Life has its ups.” He wanted me to read letters from the WEB site that Kathy had printed and bound and to look through the scrap book of all the letters and pictures that many of you had sent. This magnificent opus starts with pictures of San Francisco General and the friends gathered round to support Dave and who kept our hearts beating and our bodies fed, who cried with us and made us laugh with Smot Stories. David has NO MEMORY at all of any of his stay in San Francisco. In fact, New Year’s is a blank, too, and we’re not quite sure whether Christmas has been “saved”. We looked together at the first photos of him with head shaved, drains protruding from his skull, staples holding the skin together and tracing the path of the missing bone flap. Tubes and monitors and blue bags which sheathed his legs and breathed on their own, tightening and pushing his blood to flow, a mattress on a timer which tilted to move his weight off of one spot in a relatively successful attempt to avoid bed sores. Joan and Greg and Craig and Amy and Colleen and Jennifer and doctors Manley and Holland…… The mother of another brain injured patient at Craig Hospital said, “Some people take pictures of their sons in a coma” She was vehement, “I would NEVER DO THAT!!! I want to forget that time. Never talk about it. Never think about it. He doesn’t remember it. We’ll keep it that way.” At the time, I felt somewhat guilty, but as Dave and I looked at those pictures and friends standing by the bed, holding his hand, looking worried, or grinning at him, it was clear that he needed to know what had happened to so change his life. And he needed to know how his friends (and even total strangers) came through for him. Kathy’s note explained that all the smiles were fake at that point and that our rule was, “No one is allowed to cry in Smot’s room. Only positive thoughts and love and humor are allowed in.” He has loved listening to the emails and letters that accompany the pictures. Until recently he hadn’t been able to follow when we read them aloud. Now he looks sober or laughs out loud….sometimes the big belly laughs of old. From the beginning I’ve read them all and loved every word……but as I read them now to Dave, I am amazed at how much seems new. My brain must have been on overload. How I love to see them all together and to realize how many times many of you wrote and how the support systems of San Francisco melded so naturally into the support systems of Denver and now into Virginia friends. We have had visits here from Californians and Coloradans and New Yorkers and Pennsylvanians and Jerseyites and of course, Virginians. We remain overwhelmed and grateful. David thrives on these visits and phone calls and continued emails and letters. Pictures are good. He goes into the University of Virginia Hospital on September 11 to have the bone flap(s) replaced by a custom made prosthesis on one side and an acrylic replacement for the smaller right side hole. Dr. John Jane predicts a three day stay….so though David won’t be out in Colorado to celebrate the Pikes Peak climb with TEAM SMOT, he will be cheering you on. We are delighted that you are supporting brain research and in that way allowing David to participate. We all know that if he had never been injured, nothing would have pushed HIM into hiking up 14 miles of mountain, though he would have surely treated you all to a cold one at the top. Kathy commented on David’s improved use of his left hand. “You look so comfortable using your left hand now. Does it feel normal?” “Nope. Weird…..” Then he smiled and shrugged his left shoulder. “….but Lefties make better lovers.” Many years ago his left handed Aunt Sue gave a set of glasses that said “lefties make better lovers” to his left handed Dad. So we often see that when Dave can’t create his own sentence, he’s not at all averse to borrowing whatever he feels is appropriate. The length of this epistle must make you glad that I am remiss in communication. Friends have kept you up to date after visits, and I loved those and Jay’s and Kathy’s updates. I look forward to the day when David can make his own reports. That will be the day! Bob joins me in sending
our love and thanks, 10:05pm Eastern Time, 8/19/2001 This week I would like to lend the floor to Anne Williamson David. She has discovered a charity event in Colorado called the Pike's Peak Challenge that raises money for brain trauma research. Coincidentally enough, the Craig Hospital is a sponsor of this event. Anne is organizing a team (Team Smot, of course) to participate in the event. While none of the money raised will benefit David directly, it will support brain trauma research and will help thousands of other brain trauma victims like David in the future. -- Jay
Each year the Colorado Brain Injury Association organizes an event called The Pikes Peak Challenge. It is a hike to the top of Pikes Peak with proceeds going towards programs to support services to improve the quality of life for survivors and their families and to the Think First Program, which provides head and spinal cord injury prevention programs for children, teens, and young adults. I would like to put a team together in honor of Dave. Here are some brief details on the event:
Please contact me if you are interested in participating, donating, or just showing up for the party! Anne WIlliamson David Wednesday, August 15 11:55pm Eastern Time, 8/15/2001 Dear Jay, Wow. You were right; Dave has made some significant progress since I last saw him 2 months ago. The three days I had with him flew by and the only thing that kept me from crying when I left is knowing that Dave, Mom and Dad are coming out for a visit in six weeks or so. You beautifully described Dave's improvements last week so I won't repeat what has already been described. What I will tell are a few cute stories that show the Dave that we all know and love. Our beach friend Sheila Clancy picked me up in Richmond and drove me home to Mom and Dad's. A lively dinner discussion had us reminiscing about things that we had done as kids that Mom and Dad knew nothing about....hiding the last few bites of peas in the bottom of our milk, or stuffing those same yucky bites in the plants nearby. Dave retrieved a word that had escaped my memory. We used to bathe together (no smart comments) as kids and often didn't want to take a bath. On those nights we thought that we were tricking the 'rents by lathering up our hands with a ton of soap thereby making the water look really dirty when in fact we had not washed ourselves. I'm sure that the end result, however,were two clean little kids, but we didn't realize that. Any way, we called this elaborate soap making process "the treatment". Dave and I haven't talked about that in years so it was so great when he came up with the word as I struggled to find it.. The next night we went to dinner, a long walk down the downtown Charlottesville mall, and to the movie "Original Sin". It was rated "R" so that's what Dave wanted to see. There was a lot of skin so he gave it the thumbs up when it was over. I actually liked it too...keeps you guessing. A couple memorable things happened that night. I have to say that I was a little apprehensive about the dinner with just the two of us. Dave has always been the talker, I'm more the listener and laugher at his tales, but that night I had to lead. I always feel sorry for those couples who sit through dinner without saying anything to each other and I didn't want dinner to be like that for us. So I talked, he listened. Of course I cried briefly (the tears came over me too quickly to put a halt to) when talking to him about those first agonizing days when we didn't know if he would live or die. He just smiled sweetly at me~ like "get it off of your chest, Kath". And despite how beautifully Jay and Oakie wrote about that check signing thing...neither of them quite describe the event with the justice and magnitude the event deserves. Dave's face has a look of sweetness and accomplishment when he is done. He can not fill in anything but his name and with that he takes great care in writing each s i n g l e l e t t e r. When Jay wrote that he writes DAVID SMETH and then a long line _______, I thought that that line was a quickly whipped out one like you'd do at the end of a signature when you don't want to write the URST. But No, Dave slowly draws a nice straight line and hands the waiter the check. I was able to stifle a tear then because I was ready for it. In the theater, I had to check myself and let go of that quick initial response of embarrassment when Dave loudly read the names of the leading actors. He bellowed "ANTONIO BANDERAS", and "ANGELINA JOLIE". After the initial startle to what he was doing, I had to just smile and think how great it was. Luckily his reading ability stopped there. His rescheduled surgery is sometime in the next 2-3 weeks. They are scared to commit to a day until they know that the "fake head" (I don't remember calling it that but I'll just believe Jay) is being made. Dave is so ready for the surgery to the point that he makes us a bit nervous in the outcome he expects. "All better". He thinks that he'll be able to jog and have a cold beer afterwards. So we have had those talks with him. No one has told him that he will be all better after the surgery. He will see improvement and his recovery process should be a little easier...but not "all better". But then again, Dave may know something that we don't. He definitely has a lot of angels looking over him and maybe he's been told that this surgery will heal him. Hey, I'm all for positive thinking, I just don't want him to be disappointed if it's not as miraculous as he thought. So anyway, I've been creating my own reality with his healing this whole time "Complete Recovery", so I'm going to jump on board with Dave on this one and pray for that speech recovery and use of his right arm. I asked him what he looked forward the most to when he gets better. He said "golf". Why doesn't that surprise me? The therapy that he likes the most and wants to get back the most is "speech". I'd like to recommend a great book for any of you that would like an insiders view on brain trauma recovery. I'm in the middle of it and learning a ton. Claudia Osborn is an internal medicine physician who writes about her own experience. It's titled "Over My Head: A Doctor's Own Story of Head Injury from the Inside Looking Out". I have a clearer understanding of the challenges Dave is facing and am reminded of just how far he has to go. It's an easy read and well written. I was pleased to see how loyal all you wonderful people have been and continue to be to Dave. He gets a couple phone calls , a few emails and a couple letters per day. Thank you so much. He loves it. I finally completed his scrapbook and he has enjoyed looking at the ICU photos. He doesn't remember San Fran at all. His first memories are in Denver. We aren't sure how far back he remembers. We know he doesn't remember New Year's Eve because we have photos and he shakes his head "No". When he comes out here soon, I'll show him Thanksgiving and Christmas photos and see if he remembers those times. I've left Virginia feeling good about Dave and his progress. He has done remarkably well with his brain protruding as much as it does. I'm awed by his desire to work hard. Any excuse to work and he's there. I can't wait to see what happens this fall! Thank you for loving and supporting Dave. True friends are those that stick it out even when they are getting nothing in return. You are those kind of friends. Love, Kathy Monday, August 13 11:15pm Eastern Time, 8/13/2001 There is not a whole lot of news to report on David's delayed surgery. Apparently the CT-scan of David's skull was printed or taken on the wrong kind of film, and the fake-head manufacturer could not use it to make the prosthetic. We are told that this has been sorted out, but manufacturing could take another two weeks, then we have to schedule the operation... Anyway, we're looking either at late August or early September before David's head will be whole again. Needless to say, David is bummed. I think it is safe to say that he hates the helmet that he has to wear while he's up and about, and he was very much looking forward to removing it. And we were all looking forward to some acceleration in the rehabilitation that might come from having his brain all the way inside of his head. We are all disappointed, but no one's getting depressed about it. David is going ahead and taking the week off from rehab (since he was already scheduled to take it off because of the surgery), and Kathy is visiting this week (since she was already coming in for the surgery... are you seeing a pattern?). So look forward to a sister's report later in the week. Thank you for all of your letters and cards and well-wishes for David's surgery. He enjoyed them a lot, and we will hold onto them for next time. (Although, of course, we encourage you to send more cards in the future!) We will let you know more as we learn it. Jay Thursday, August 9 9:20am Eastern Time, 8/9/2001 David's surgery is going to be delayed. There was a problem manufacturing the "fake head" (as Kathy phrased it), and the prothesis will not be ready in time for the operation. We will find out today when the rescheduled date will be. Stay tuned! Monday, August 5 9:00pm Eastern Time, 8/5/2001 Well, I finally get to write a report of my own! I just spent the weekend with Dave in Virginia, and it was better than I could have hoped for. We watched a couple of movies on video, went out on Saturday for dinner and a movie (giving Mom and Dad an evening alone in their beautiful new house), and played several hours of foosball. I won't bore you with a play-by-play (either of the weekend or of the foosball games) (except to say that they were very close -- the games, that is) (but Dave won most of them), but I will give you my very in-expert opinion of Dave's progress since I last saw him at the beginning of June. I asked Dave over dinner if he felt that he was progressing. He shook his head and said, "Nah." I couldn't really convince him, but I will try to show you the leaps and bounds that Dave has made. The first and most obvious progress is David's walking. At the wedding in May, David stayed seated in his wheelchair all day. At the time, he enjoyed standing up for a few minutes at a time because it felt good to stretch some muscles. But he had just started walking when I saw him in early June, and because his cane had been misplaced, I never had an opportunity to see him in action. Well, on Friday Dave and Dad met me at the Charlottesville airport, standing tall and proud. Hugs, smiles, and high fives all around and then we WALKED out to the car. I was pretty stunned. Cane in his left hand, Dave puts his weight on the left foot, plants the cane forward, swings the right leg forward, shifts the weight to the cane and right foot, moves the left foot forward... He can keep up a slow strolling pace, stopping occasionally to scratch the nose or shoo away a bug. He is pretty confidant walking around, but it is important to stay near him (just off his right hip, a hand positioned at the ready behind his back) if you're walking with him. On even ground, he does really well. Uphill is a little tricky. Gravel and un-even surfaces are even trickier. If he were to lose his balance, he has very little ability to correct himself. And as he falls, he tends to twist a bit, his right side rotating forward. This didn't happen, but this was the warning that Mom gave to me. Actually, when we went out on the town Saturday night, I probably gave Dave a little too much leeway to walk around. Fortunately, he was able to handle everything we ran across. Or, rather, walked across. David is walking around the house quite a bit. He walks from the bedroom into the dining room (or out onto the new deck!) for lunch or dinner. He walks down the stairs (leaning on the railing) to play foosball or watch the big-screen TV. (Stay close to him, in front, going down the stairs.) He can even make it back up the stairs, but you should stand behind him and if necessary, help him lift his right foot over the lip of each stair. (His right hamstring isn't kicking in yet, so he hasn't mastered the art of pulling his foot backwards as he lifts it from one step to the next.) For each step, he plants the cane on the next step up, steps up with the left foot, and then pulls his body (and right foot with it) up to the next step. You will notice that the toe of his right shoe has taken a bit of a beating from these stair lips! If you go down to play foosball, you will need Dave's wheelchair. The only other time he uses it much is at night -- we leave it beside the bed in case he needs to get up in the middle of the night. This leads us to the next major difference between early June and today -- Dave has become increasingly self-sufficient. Dave can take care of his entire morning and evening routine by himself -- dressing, tooth brushing, shaving... It's better than I can do most days. The only tricky part is pulling his right shoe over the leg brace -- it's a monster task even with two good hands! So while Dave very well COULD get up in the night and walk around, he needs the brace (to support the leg and ankle) AND he needs the shoe (for traction and stability), so we prefer that he just moves around in the chair. As far as cognition goes, David is ever-more aware of things going on around him. I will echo everyone else's sentiments that Dave is totally there -- his humor, his smile, his intelligence, his ability to mock people without saying a word... But more than just being "in there", these characteristics are coming out more and more. Dave is tracking conversations that go on around him. He focuses on conversations that would have bored him to tears 12 months ago. Over dinner, he sat through my reading a letter I'd written to him describing why I had wanted him to be my best man. Definitely a "sensitive guy" conversation, but David listened intently and repeated back the important words or phrases from each statement that I made. The biggest difference in David's speech, however, is in his responses to statements and exclamations. In early June, David was getting quite good at repeating single words from statements that people said to him. "Hey, Dave, let's go have some steak for dinner." "Dinner" he'd say. "Man, that's good ice cream!" "Ice cream" You get the idea. Now, David is formulating appropriate responses to these kinds of statements. "I can't wait for football season", I'd say. "Redskins!" said Dave, grinning. Or in foosball, I'd shout, "It's tied up!" Dave would say, "Seven, seven." "Hey, Dave, here's your hat." "Sweet lid!" David even put together a number of statements that expressed something that he wanted, or some other more complex thought/speech pattern. On Saturday, we had talked earlier about going out on the town for dinner and a movie (Scary Movie 2 -- stoopid, don't bother, not even on video) (but we kinda liked it anyway). So around 5:30 or so, Dave and I finished our 2-out-of-3 series of 3-out-of-5 games of foosball, and trudged our way upstairs, carefully cradling our foos-blistered hands. Once we got to the top, I expected Dave to head back to his room for a lie-down, when he turned to me, eyes bright and expectant and said, "Goin' out?" And so we were. (It turns out that if Dave decides that it's time to go, then the time to go is NOW. Grab what you can, because you're headed out the door!) He made an even more complex statement as we were driving away from our decadent beef tenderloin dinner on Saturday night. (Dave's treat, by the way -- watching him sign his name is a much more powerful experience than I would have guessed. He prints out "S m e t h..." and then finishes it up with a squiggle "------". It's awesome.) We were on our way to get milkshakes when we drove past Preston Apartments, where Kathy had lived for a year between high school and college, and while Dave was still a student at Woodberry. As we drove by, I gestured towards the apartments, and asked Dave if he had ever taken weekends away from Woodberry to stay with Kathy while she lived there. He smiled his great big smile and said, Yep! Then he glanced back towards the receeding apartments, and a look of extreme concentration came over his face. "Kathy..." he said, "...lived there?" I was happy and floored and grinning goofily all at once. What an amazing question! What a complex web of connections he had to make to ask it! For some reason, this was one of the best moments of the weekend for me. So that's the skinny on Dave, I think. On Sunday, the 12th, he is heading into the hospital again to get ready for his surgery. They are replacing the missing skull bits -- the big flap on the left side of his head, and a small hole on the right side. The prosthetic plates (which will not be made of golf ball material as requested) will push David's brain back into its proper position and size. The doctors tell us that once the brain is back in position (and once Dave has recovered from this relatively minor surgery) that we could begin to see some major improvements in David's recovery process. They have been stunned at David's progress to date, but everyone is looking forward to the progress we hope to see over the next couple of months. David himself is very much looking forward to the surgery, but we hope that his hopes are not set too high. The surgery itself will not "fix" David's condition, but by aligning the brain properly (or something) it will set the stage for more rapid rehabilitation. Kathy will be in Virginia for the surgery and the few days afterwards. We are excited and nervous at the same time. We are confidant that all will go well, but we again ask for your love and prayers for this surgery. The operation itself will take place on Monday, August 13. David will stay in the hospital until probably Wednesday. Please send cards and messages -- Dave loves them! David Smethurst Thanks, again and
always, to you all. Little bro out! |